✦ Mystics — a Sage reading
so i literally have an incurable brain disease lol
What this covers
This video explores the creator's journey as a carrier of the C9orf72 gene mutation, which predisposes them to frontotemporal dementia (FTD) and amyotrophic lateral sclerosis (ALS). They reflect on inherited genetic risks, tracing the mutation to a Scandinavian ancestor, while grappling with family trauma linked to their mother’s progressive illness and childhood abuse. The creator weighs the emotional burden of potential cognitive decline against personal resilience, discusses ethical dilemmas around medical aid in dying, and balances pragmatic acceptance of their limited lifespan with creative pursuits like manga and makeup artistry. Their narrative intertwines genetic legacy, personal trauma, and the search for meaning amid uncertainty.
The outline
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C9orf72 Gene Mutation and Health Implications
The creator discusses their recent diagnosis as a carrier of the C9orf72 gene mutation, which is linked to frontotemporal dementia (FTD) and amyotrophic lateral sclerosis (ALS). They share family history of these conditions, explain the genetic mechanism, and reflect on the implications of their diagnosis, including potential symptoms, prognosis, and their personal preferences for disease progression.
- Confirmed as a carrier of the C9orf72 gene mutation, which causes toxic protein buildup and is linked to FTD/ALS.
- Family history includes FTD and ALS, prompting genetic testing after their mother’s diagnosis.
- The mutation causes unstable repeat expansions, leading to cellular toxicity and potential neuronal degeneration.
- Pre-symptomatic but plans to monitor markers like NFL/polyGP levels to track disease onset.
- Prefers ALS over FTD due to faster physical decline vs. gradual mental deterioration.
- Notes that while some carriers never develop symptoms, most eventually face neurological decline.
Genetic Disease and Early Life Trauma
The creator reflects on their fear of a genetic disease inherited from their mother, which could lead to cognitive decline and a diminished quality of life. They recount childhood abuse and neglect, linking it to their mother’s progressive illness, and express a determination to maximize their time before potential decline. They also mention the emotional toll of public backlash and their mother’s eventual outreach, highlighting the disease’s devastating impact on their family.
- Fear of a genetic disease causing cognitive decline and loss of potential life.
- Family history of the disease, including maternal grandmother and mother’s experiences.
- Childhood abuse and neglect attributed to the mother’s progressive illness.
- Creator’s resolve to prioritize productivity and avoid a similar fate.
- Hope for future treatments like ASO or gene editing to address the disease.
Genetic Predisposition and Family Legacy
The creator discusses their genetic risk for Frontotemporal Degeneration (FTD) and Amyotrophic Lateral Sclerosis (ALS), tracing the mutation to a Scandinavian/Northern European ancestor. They reflect on their personal traits—stoicism, avoiding alcohol/drugs, and distancing from their mother’s abusive legacy—that helped them avoid similar issues. The creator weighs the emotional burden of inheriting the disease versus the genetic lineage, compares their condition to Huntington’s disease, and contemplates reproductive choices amid uncertainty about their future health.
- Genetic mutation linked to FTD/ALS from a Scandinavian/Northern European ancestor, with high concentrations in Finland.
- Personal traits (stoicism, avoiding alcohol/drugs) helped avoid behaviors associated with the disease.
- Emotional struggle with inheriting the disease vs. the legacy of their mother’s abuse and FTD.
- Comparison to Huntington’s disease (different gene/chromosome but similar outcomes).
- Contemplation of egg donation and parenthood, weighed against genetic risks and financial realities.
- Mention of family history: grandmother’s survival of the Holocaust, father’s cognitive health, and maternal lineage’s struggles.
Navigating Genetic Disease, Ethics, and Creative Aspirations
The creator discusses their genetic condition (C9 mutation causing ALS/FTD), the ethical dilemmas around medical aid in dying (MAID), and their reflections on life choices. They emphasize the importance of genetic testing for families, critique the lack of support for advanced directives, and share their shift toward creative pursuits like manga despite societal skepticism.
- The creator’s C9 mutation leads to progressive neurodegenerative disease, with uncertainty about future treatments.
- They critique the disparity in funding for ALS/FTD research compared to its prevalence.
- Questions the eligibility criteria for MAID, arguing that early-stage FTD patients may not meet 6-month prognosis thresholds.
- Advocates for more flexible advanced directives to avoid involuntary starvation as a form of MAID.
- Reflects on career shifts, acknowledging societal undervaluation of astrology and their struggle to gain recognition.
- Shares their journey into manga creation, overcoming self-doubt about artistic ability.
Creative Process and Health Reflections
The creator discusses their creative work, blending makeup artistry with anime-inspired drawing, while reflecting on their genetic disease (C9 ORF72) and its impact on their life expectancy. They share struggles with hair artistry, creative influences (AOT, Nana), and a pragmatic yet emotionally complex mindset toward their condition, balancing hope for medical advancements with acceptance of their limited lifespan.
- Focuses on makeup drawing and refining anime-inspired art, citing AOT and Nana as influences.
- Acknowledges the genetic disease C9 ORF72, which limits life expectancy to ~13 years.
- Expresses frustration with societal expectations and a desire for others with similar conditions to connect.
- Balances hope for future treatments with acceptance of their mortality, prioritizing legacy and impact over prolonged suffering.
- Criticizes unsolicited health advice and emphasizes personal agency in managing their condition.
How it ties together
1. **Diagnosis and Genetic Background** - Explanation of C9orf72 mutation and its link to FTD/ALS - Family history of neurodegenerative diseases and Scandinavian/Northern European ancestry - Personal traits (stoicism, avoidance of substance use) that mitigated inherited risks 2. **Trauma and Family Legacy** - Fear of genetic disease causing cognitive decline and diminished quality of life - Childhood abuse and neglect tied to mother’s progressive illness - Emotional toll of public backlash and mother’s eventual outreach 3. **Ethical and Life Choices** - Contemplation of medical aid in dying (MAID) and reproductive decisions - Critique of societal lack of support for advanced directives - Shift toward creative pursuits (manga, makeup artistry) despite skepticism 4. **Creative Expression and Resilience** - Integration of makeup artistry and anime-inspired drawing into creative work - Reflections on limited lifespan and hope for medical advancements - Balancing pragmatic acceptance with emotional complexity toward their condition
- C9orf72 gene mutation
- frontotemporal dementia
- amyotrophic lateral sclerosis
- genetic testing
- repeat expansion disorders
- Genetic Disease
- Family Trauma
- Inheritance
- FTD
- ALS
- genetic mutations
- family history
- Huntington’s disease
- reproductive choices
- inheritance patterns
- medical aid in dying
- advanced directives
- astrology
- manga creation
- Creative process
- mortality
- anime culture
- health advocacy
- C9orf72 gene
- frontotemporal dementia (FTD)
- amyotrophic lateral sclerosis (ALS)
- Huntington's disease
- genetic testing
- repeat expansion mutations
- Mother
- Grandmother
- Creator
- FTD
- ALS
- 9th chromosome
- Scandinavian/Northern European ancestry
- father
- Holocaust
- egg donation
- TikTok
- C9 mutation
- MAID
- astrology
- manga
- advanced directives
- C9 open reading frame 72
- Attack on Titan (AOT)
- Nana
- Maren's disease (proposed name)